In April 2013, AHRQ issued a call to authors for abstracts describing original research or systematic reviews on methodologies for studying patient-centered health outcomes in rare diseases . The project was a follow-up to an AHRQ research conference series that began in 2006 and has previously produced four journal supplements dedicated to research methods. Authors with abstracts that were highly rated by a panel of rare disease experts were invited to submit a manuscript for peer-review and potential publication in a supplement to the Journal of General Internal Medicine.

Below are links to the article accepted for publication; these articles are freely available online. A free printed copy of the journal supplement is also available through the AHRQ Publications Clearinghouse. To order a printed copy of the supplement, call 800-358-9295 or send an email to AHRQpubs@ahrq.hhs.gov. Refer to AHRQ publication number OM14-0049: DEcIDE rare disease methods supplement when ordering.